A butterfly lights beside us like a sunbeam.

For a brief moment it's glory and beauty belong to our world.

But then it flies on again, and though we wish it could have stayed, we feel so lucky just to have seen it.

Tuesday, June 19, 2012

Bedtime together, legs always intertwined. Fall 2010.
Teething, but still a glimmer of a smile...

Nalah teethed for about 18 months of her 26 month life. The first tooth was the hardest. It took four weeks to emerge, and then disappeared again the next day. A month of work, for what! Nalah was tube fed, so the teeth always seemed an unnecessary source of discomfort, however, Nalah took it all in stride. She cut about 10 teeth in the months before turning two. Nalah teethed continually from about six months to her last days. This photo reminds me of her quiet strength. She rarely, if ever cried. Nalah was more likely to cry if something did not go her way. For instance, the one night we tried to put the girls to bed at different bedtimes....Nalah did NOT appreciate being put to bed before her big sister. If Nalah ever cried, we generally asked Karis to enter the room and then she would stop. If Nalah did not stop crying when Karis was beside her, then we would consider whether Motrin was necessary....since she hardly ever, every cried, and if she did there might be some pain. I can see that Nalah is under the weather in this photo, I can see the tiredness in her eyes. However, I also see her strength. She was a tenacious little soul. Defying the odds, defying death, for far longer than her medical team expected. My little warrior. Nalah taught us about taking life in stride, and remaining calm, despite any storm.

Nalah and her Daddy

In honour of Father's Day, an early photo of Nalah and her Dad. Nalah is very young here, likely less than six months. Always alert, she was very focussed on family members. She knew us, and how to communicate with each of us. Her Daddy would ask her to do certain things, facial expressions, and she would copy. Daddy was wrapped around her finger. I always enjoyed seeing the love/compassion when they gazed at each other. A favourite memory.
Life Beyond:

It has been a long while since I sat to write here, Nalah's space. The loneliness for my girl is so profound. Life carries on and seems to carry me along with it, broken yet strong. There are so many enduring life lessons that Nalah has taught me. What is important. What is not.  How to truly care, how to truly love. Also, to be loved. Nalah taught me to receive love despite my own imperfections. Being a trisomy parent is a challenge. There is at the constant triage, the medical decisions often without medical training, and too often without a supportive, fair, compassionate medical team. There are sleepless nights, months of them. If lucky, years of them. It is marathon parenting. Now, that I am on the other side all I see is gratefulness, loneliness and love. I am sure other words could be offered and they are not in any particular order. The largest legacy, in life beyond our time together, is love. Love for one's children, one's family, friends, and also, love for oneself. That has been the hardest lesson. Nalah encourages me every day, despite the physical distance. There are always messages of love flowing between us. Today for no apparent reason as I was running my bath, one spot would not take any water, and created a little crater shaped exactly like a heart. The water just kept running around it. No explanation, but that sort of thing continues to happen. Little messages, little signs, and lots of love.

Life beyond is lonely. However, Life beyond is much fuller than it ever could have been before. Nalah opened my eyes to what truly counts in this world, our inner (spiritual) world and how to truly give and receive love (from self and others).

Still, I miss those days. The together days. It has been 18 months now. Too long to be apart from a precious child. It is hard to even recount the stories, I spend most of my day treading water emotionally, trying to hold back tears while I go about my daily tasks, work, parenting, responsibility for a household, and all the rest.

Agape. Eternal love. This is what we are left with now.  Does it make sense to be sad and grateful all at once? Does grieving ever make sense?

Nalah, I am watching Karis play with her little girlfriend here in the house today. It breaks my heart that you can no longer play together. Today I filled out a school application for Kindergarten. Of course, the question "Any preschool siblings?" I answered with your full name and your dates: September 17, 2008 to December 9, 2010. There is NO POSSIBLE way I will ever exclude you from anything we do. Yes, Karis has a sibling. Her residence is Heaven. She is the little sister. Our little sweetheart, always.

I miss you munchkin.